Because of my sensitivity taking levo tablets im now on liquid thyroxine.
Ive been on it for two months the brand is Teva lactose free. I am not lactose intolerant but thats what ive been given.
The palpatations have stopped but still have achey body. I have put on a stone in weight in 2 months only around my stomach area and midriff its so uncomfortable.
Teva liquid was recommended to me so i had it put on my prescription but because of the weight gain i would like to try another brand that might be better for me.
Any recommendations from anyone who is taking liquid thyroxine would be greatly appreciated.
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Odinil
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I suspect your weight gain is more likely because you are not yet optimally medicated, rather than a liquid Teva issue. I for one cannot lose weight unless BOTH free T4 and free T3 are nice and high. Do you have any recent blood results you can share?
My T4 is always top of range and T3 always low in range.Im about to have a blood test that i requested from my gp.
I didnt get the chance to speak to him just a message passed on thru receptionist so im guessing it wont include T3 testing.
I recently had a B12 Folate Ferritin blood test by gp. My B12 is low borderline but gp says its normal.
Im due to have a blood test next week at addensbrooke hospital they do test my T3 levels. My consultant at last visit said my tsh was too high and needed to come down and then maybe she would give me a small amount of T3.
I feel im up against a brick wall the whole time. Im going to see what happens when i speak to my consultant in a couple of weeks time when results will be in, if im still being fobbed off because thats how i feel i am going to see a private consultant as i feel thats the only way i am going to get to the truth regarding my meds.
When i get the gp and consultant's blood test results back i will put them on my post.
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
What’s your diet like
Are you vegetarian or vegan,
gluten free or lactose free diet
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
How much liquid levothyroxine are you currently taking
Have you tried taking half dose waking and half dose at bedtime
I take 65ml anything higher and i get more smyptoms just like the tablets.I havent tried taking it in two halfs thats an idea i may be able to up my dosage if thats whats needed. I always think the higher the dose the bigger the smyptoms. I'll never forget what my surgeon said pre op, we'll whip it out, pop a tablet each day and you'll be fine !!!!!
Its an absolute nightmare if you are not going through yourself its hard for people to understand. If you mention T4 and T3 and poor converter to non sufferers you can see you've lost them lol.I know Teva levo has a terrible reputation and i have always refused them. I was on Actavis and wockehart did ok on both but then Actavis became Accord and thats when all my problems started that was last September.
Im not sure about Teva liquid its the first brand ive tried so far, its lactose free although i am not lactose intolerant.
I do know that ive put on a stone in 2 months so im considering changing to another brand although the pharmacist says not too keep changing i cant help thinking thats because it seems the easiest and cheapest one they can get from the suppliers.
If its lactose free do they substitute it with something else who knows!!!!
No I dont think it has anything added other than the hormone, water and glycerine (sickly sweet isnt it ? but apparently doesnt cause Diabetes according to my Endo) but helvella has a full ingredients list.
I have found it hard with Lactose and Gluten since starting on Levo two years ago. I didnt before. I think Levo somehow intereferes with absorption of Lactose and Gluten. Helvella has written a post on this phenomena. My throat swelled terribly and had a Sjogrens flare ( which I didnt know I had) and developed Oesinophillic Oesophagitis.
So I’m happy to be on Teva!
I take Low dose Naltrexone which helps massively!
I’m still trying to get right. I have friends swallow a Levo tablet for years and are absolutely great! I was a walking leader for years but since starting Thyroid replacement I cant walk too far. I’m having bloods done on NHS in Aug and going to get Medichecks at same time ( though I havent found Medichecks reliable).
Honestly so much for my trust in doctors looking after you - And my son has just qualified as one and regarding health matters but become as arrogant and dismissive as the rest 😞 x
Thats interesting.I am on 65mg thyroxine liquid daily.
I have a syringe to measure dose so i can split it into two quite easily.
I was told by the gp to take 75mg liquid daily and not my usual dose of 62.5 mg tablet but i got
Palpartations, fluid retention all around my knees, blurry eyes although i still have blurry eyes on lower dose, tingling pins and needles in hands fingers and lower legs and aches and pains. All the symptoms as soon as i increase my dosage.
He just didnt listen when i told him that if i increase i get such awful symptoms, completed dismissed me.
The pharmacist told me i should reduce on liquid because it absorbs much more than tablets.
Its quite obvious that gp's see as nuisances not sufferers.
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
Book the earliest possible appointment. It is a fasting test but you can drink water and allow a gap of 24hours between your last dose and test and take it afterwards.
Also request B12, Vit D, iron, ferritin and folate.
Post results, with the ranges, onto a new post for comments.
p.s. If GP wont test all of the above, you can get a private test from one of the labs and ensure you are well-hydrated a couple of days before:-
Blood tests being done go's and hospital. My B12 and folate are always borderline low but im told its normal. Tried supplementing but get pains pins and needles numbness in hands and lower arms plus blurred vision so stopped taking. Because b12 deficiency and levo can have simular symptoms its hard to know whether its the levo med or b12 supplements. Im at my wits end.
I looked on Medicheck and its very expensive to have a PA blood test done. If its the only way im going to get the proof and hopefully the gp takes notice of a private result i will have to pay it. Ive been told they dont have to act on a private result. When i last mentioned a medicheck result to the gp she eye rolled and said your blood test result we done is fine. How the hell do you make them sit up and listen
If you live in the UK never mind your doctor's eyes rolling. Tell her as you've already got one (or two or more) autoimmune diseases, you've been advised to get a blood test to exclude that you do not have pernicious anaemia and to give you regular injections if you do have it.
Pernicious anaemia is common and my mother had it too. Unfortunately her GP stopped giving injections as my Mum was told 'your bloods are fine now' you don't need any more injections. My sister and I thought that was 'good advice' but it was awful advice as my mother, due to the GP stopping injections died of stomach cancer
You don't need to say who informed you as I now have five autoimmune conditions and all have to be looked after. Just as when, we're hypo, we cannot do without replacement hormones. We are looked after by the NHS.
There is also a pernicious anaemia site on Healthunlocked and am sure the members will be as helpful as those on this forum.
Thousands of people do not have the werewithal to have private doctors and private tests so that's why, in this country, we have the 'National Health Service' (NHS).
We always thought that doctors knew the basics of autoimmune diseases. That's not the case as I had to diagnose myself despite a TSH of 100 (I had never heard of hypothyroidism before or if someone mentioned it I would not have recognised it at all nor had it any meaning).
However, regarding my mother being already diagnosed as having P.A. injections shouldn't never be withdrawn.
So many people have told me that once you have B12 injections you have to have them for life. You cannot stop having them so if they know this and they are not doctors what chance do we have. Ive given up taking a gp's advice no matter what you say they go against it they dont always know best.
As Shaws says I think it could be helpful for you to post on the pernicious anaemia forum on Healthunlocked.
The sensations of pins and needles, numbness and the pain you describe when you supplement B12 can be part of the healing process as nerves reawaken and start to work again. I have read posts where other forum members have mentioned having a similar experience to yourself when they've supplemented B12.
The members on the PA forum will be able to advise you and are again a very friendly and helpful forum.
I do eat chicken and fish so not vegan.I started with B12 better you drops but stopped and started Igennus super B-Complex one tablet not two. I didnt feel good so i stopped and started on nature provides Bioactive B12 drops i had to stop those too as the aches and pains in my hands and lower arms was so painful. I had tingling pins and needles too. I felt so tired if i need B12 i cant understand why B12 supplements make me feel so horrible.
Should i increase my levo dose as well as taking the supplements. I actually get worst smyptoms the higher the dose.I dont think i will be able to cope with the awful effects from both.
Sounds like you are a poor converter of Levothyroxine T4 to active T3. I was prescribed liquid Levothyroxine also on a similar basis to yourself. I put on 2st very quickly. The liquid Levothyroxine didn’t make any difference to me. What really helped me was the introduction of T3 Liothyronine medication which I had to get a 3 month trial on privately. It was a huge success for me. My T4 level was at the top of the range but my T3 level was at the bottom. I was only converting 8% to T3. I also did the DIO2 gene test through Regenerus Laboratories which came back positive. This proved I am a poor converter. I took the result to my GP who scanned the report onto my NHS file. I now get T3 Liothyronine on the NHS. I truly feel brilliant now after struggling for 11 years previously just on Levothyroxine. I still take liquid Levothyroxine and I use the brand Wockhardt. I have also used Ten Pharma brand. Both suit me quite well. I was only put on liquid Levothyroxine to rule out any excipients issues but I believe it made no difference as it was T3 medication I really needed.
Hi I'll look up D102 test. My consultant is going to call me on the 22nd July im hoping she will trial me on a small amount of T3 as she mentioned it at my last appointment under her breath but only if my tsh has gone down as i need to be suppressed because of the cancer which she said means putting my dosage up but if i do i get heart palpartations worst blurred vision aches pains etc.
By then i will have blood test results from the gp and the hospital.
Not holding out much luck.
I tried taking B12 supplements but i felt so ill the pain and tingling in my hands and lower arms were awful. Its my blurred vision that upsets me the most. I asked the gp to let me have a PA blood test but was refused. Gps consultants all deny that my T4 and T3 is not where it should be and my B12 and folate are normal even though im borderline low in range. Ive tried countless pharmacists trying to get a brand of liquid thyroxine that better suits me but all i get is we give you whatever comes in from the suppliers i say even if its on my prescription yes they say we dont have to order the brand on the prescription anymore its whatsever the cheapest. I ask for Wockehart and told its unavailable or they dont do liquid.
If i still get no joy on the 22nd im going to see (name removed by admin)
'They' stopped prescribing liothyronine (T3) due to the exorbitant cost but I'm sure if they tried they could source it elsewhere - far cheaper than the NHS pays for it.
When i last saw my consultant in december i complained how unfair it was that T3 was not available on the nhs to patients that really needed it, she replied well i think thats going to change soon, i said, really when? She just smiled, didn't comment.
I just dont know how to get them optimal. I feel terrible when i take B12 supplements.Do i need to persevere so difficult when trying to hold my job down. Im struggling.
As you feel terrible when you take B12 tablets, you might need injections instead if your B12 is low.
Your stomach may have made some changes so that it no longer can absorb B12. Ask GP to check the 'intrinsic factor ' which will show whether you have - or don't have - pernicious anaemia diagnosed through a blood test.
I had severe palpitations on levothyroxine (T4) but they resolved when T3 was added to T4 and shortly thereafter I went onto T3 alone and feel well and am symptom-free.
My nhs consultant said she would give me a private prescription for T3 so she must think i need it. I didnt further it because i dont think i will be able to fund it myself. Im going to see what she says on the 22nd of this month im hoping she will give me some T3 she mentioned it at last appointment but only if my tsh has gone down. She sent me for a Nurologhy test because i was complaining of pins and needles and numbness in my fingers hands lower arms and legs.
Im about to have a 24 hour heart monitor fitted because of the palpatations and breathlessness.
The palpatations have stopped now i am on liquid levo and the tingling and numbness but i still dont feel well and horrible weight all around my stomach.
Maybe my consultant is ruling out any conditions that may not be connected to T4 hopefully this will prove that it is T4 causing it. I live in the borough of Waltham Forest London.
Is T3 the same as T4 as in different brands. I have a difficult time trying to get the same brand every time i pick my T4 prescription up. They always seem to want to push Teva brand. I was told by a pharmacist that they dont have to take notice of whats on the prescription now as far as a brand is concerned they can give you whatever their supplier sends them, the cheapest!! If im lucky enough to be given T3 will i have the same problem?
Are the nhs brands as good as the private prescription Thybon Henning brand?So if people are lucky enough to get T3 prescribed on the nhs do they do well on nhs brands?
Does it make any difference to the quality if you fund it yourself?
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